Accompanying Sofie…

When I sent Sofie home after she was discharged from the hospital at the end of January, I told her I’d come fetch her at home to bring her for her appointment at the ID clinic on 10th Feb. Looking at her condition then, I simply didn’t have the heart to let her go to the hospital by bus, even if accompanied by an adult.

Yesterday, as I was getting ready to go out to fetch Sofie, I received calls from unfamiliar numbers. After my bath, I noticed 3 missed calls – all from different numbers but almost similar… the different number was just the last digit. I figured the calls must have come from a government department or agency, but wasn’t quite sure which exactly. If I were to call back, who would I say I wanted to speak to? So I thought I might as well just let whoever it was to call me back if it was important.

Then when I was already driving, my phone rang again. When I answered, I was going “hello! hello!” a few times, yet couldn’t hear anyone at the other end. After the 3rd time, and the same thing happened, I decided to call back the last number. It was actually a district hospital.

“Tadi ada siapa2 call saya ke?”

“Ni nombor xxx-xxxxxxx ke? Puan Afizah ke?”

“Ya, saya.”

“Sekejap ya, ni panggilan dari Hospital ________. Ada orang nak bercakap, nanti saya passkan line.”

The person who wanted to talk to me was one of the nurses whom I met during my clinic duty on Wednesday. The ones who  accompanied Hamidah to the hospital. Well, knowing that I may be visiting Hamidah at the hospital and/or her children at home, the nurse felt it was important to notify me as soon as possible about Hamidah’s death. Yes, Hamidah passed away the same night after she came back from the hospital appointment in Ipoh ID clinic. I never had the chance to do any follow-up. I thanked the nurse for having the courtesy to inform me. It wasn’t her duty to inform me but she did anyway, and I appreciate that very much.

Anyway, yesterday I used my GPS to go to Sofie’s house as she had moved to another house. Although she wasn’t well enough, her sister couldn’t take it any longer being charged outrageous amounts by the landlord for water (refer my earlier posting on 1st Feb). So they moved immediately after the CNY holidays. Sofie’s sister arranged for everything. The present house is bigger and nearer to Ipoh. The previous house had only 2 rooms and 1 bathroom. The present house has 3 rooms and 2 bathrooms. The rental? Same for both houses. So Sofie and her sister certainly got a better deal at the present house. More importantly the house has its own individual water meter (unlike the old house) so whatever amount they have to pay for water will be for whatever they use.

Sofie, Saiful and Ika were having their breakfast when I got to their house. The 2 older boys were at school. Ika’s & Saiful’s school session is in the afternoon. But Sofie was not comfortable leaving them home by themselves while waiting for their bus to fetch them, so yes, the 2 kids got to skip school again. There was no way we’d be able to come back on time to enable them to go to school. Sofie looked a lot better than when I last sent her home. Still visibly weak but at least she didn’t need a wheelchair.

At the hospital, I dropped them off first before going round to look for a parking space. There was none the first round… not even my usual place which is quite a walking distance from the specialist clinic. I then came in another round, and this time somebody just got out of a parking lot very near the specialist clinic. My luck! :-)

There weren’t many follow-up cases at the HIV clinic, only 8, but each one’s turn took quite some time as the specialist there really looked into details. By the time Sofie’s turn came, it was already around 12 noon. I went in as well to find out Sofie’s status. The doctor took some time looking at Sofie’s file and analysing all her previous test results. She was quite upset to note that none of the medication given to Sofie had any effects on Sofie. Viral load is still very high and CD4 is still very low.

Sofie started on her first line of HAART (highly active antiretroviral therapy) in 2009. That was probably the best line for her, but she blew it because of her own non-compliance. Not that she didn’t take her medication at all, but she didn’t follow the time. Despite being told that she must take her medication on time, she’d usually take them when convenient for her. So the first line of HAART didn’t work out. During this time, the specialist was on sabbatical leave and so her case was just referred to MOs who let her continue with the medication despite tests showing unfavourable results. “If I was around then I would stopped her medication long ago! What a waste!” she said. You see, once they aren’t compliant, the medication will not work on them and they will have to change to another line of medication.

So a few months ago, Sofie started off with another line of medication. This time Sofie made sure she took her medication regularly and on time. But alas, the second line is simply not suitable for her. She vomitted every time she ate and her internal organs were affected as well. The doctor stopped the medication as well and she was hospitalised.

This time, after looking through all the previous records, the doctor was upset. Upset with the fact that Sofie had not been compliant when taking the first line of medication. “Saya bukan tak mau tolong you tapi saya sendiri susah mau tolong kalau you tak mau tolong diri you sendiri,” she said to Sofie. I can understand the doctor’s frustration. She doesn’t have much choice left for Sofie’s next line of medication. She wanted to make sure that Sofie will not blow it this time around.

Noticing that Sofie’s left eye seemed reddish and a bit swollen, the doctor worried that it could have been caused by infection. So the doctor prepared a referral letter for Sofie to see the ophtalmologist downstairs. She also wanted to see Sofie’s latest test results so Sofie was also sent to do some blood and urine tests. Sofie will have to come for another appointment next week. Then the doctor will decide if it was the right time to start Sofie with her next line of HAART.

By the time we were done talking to the doctor and the nurse, it was already after 1 pm. We went down for Sofie’s blood and urine tests as it was open during lunch hour. To see the ophtalmologist we’d have to wait until the clinic reopens at 2 pm. So I brought them to the hospital cafeteria first for lunch. By 2 pm, we went straight to the eye clinic, showed the referral letter, Sofie had to go through a few tests before she was given a piece of paper and asked to get a number for her turn to see the ophtalmologist. Judging from the number of people at the clinic, it would take some time before Sofie’s turn came. Well, at least she managed to see the ophtalmologist on the same day instead of being given another date for her appointment.

Since it was already after 2pm, I told Sofie I’d go off first and come back later. I actually decided to go home for my zohor prayer first. My house isn’t that far from the hospital so it didn’t take long to reach my house. After my prayer, off I went to the hospital again. Went straight to the eye clinic but couldn’t see Sofie, Ika or Saiful. I tried to call but my calls simply couldn’t get through. The phone reception at the eye clinic was very bad.

After a few times going in and out of the eye clinic, I finally saw the 3 of them. They just came out from one of the rooms and were told to wait for their card. Thank God, according to the ophtalmologist the red eye was not due to infection. We were then given the medicine slip and a card for Sofie to go to the counter to get a date for her next appointment. There was a queue there, so I told her to settle her appointment while I went over to the pharmacy to get her medicine.

There was quite a long queue to get a number at the pharmacy, but once I got the number, I didn’t have to wait too long. By the time I got Sofie’s medication, I went back to the eye clinic and Sofie was not done yet although her queue was shorter. It was already her turn though so we didn’t have to wait much longer.

But I sure do pity Sofie. She will have to come for her appointment at the ID clinic on the 17th, then at the eye clinic on the 21st. Then on the 23rd, she will have to bring Saiful to the eye clinic for his appointment. Sofie tried to ask for her appointment to be changed to 23rd so she could come with Saiful on the same day, but the nurse told her that she’s supposed to come within 10 days which is supposed to be 20th, but since 20th is on a Sunday, they gave her the next day’s appointment. So nope, no changes.

I jokingly told them to set up a tent at the hospital compounds so they didn’t need to travel too often to the hospital.

I won’t be around next week so Sofie will have to come to the hospital on her own. I will check on her after I come back.